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Feeling disability: theories of affect and critical disability studies

GOODLEY, Dan
LIDDIARD, Kirsty
RUNSWICK-COLE, Katherine
English
2017

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This paper explores connections between affect studies and critical disability studies. Our interest in affect is sparked by the beginnings of a new research project that seeks to illuminate the lives, hopes and desires of young people with ‘life-limiting’ or ‘life-threatening’ impairments. Cultural responses to these young people are shaped by dominant discourses associated with lives lived well and long. Before commencing our empirical work with young people we use this paper to think through how we might conceptualise affect and disability. We present three themes; ontological invalidation in neoliberal-able times; affect aliens and crip killjoys; disability and resistant assemblages.

Access to health care in an age of austerity: disabled people’s unmet needs in Greece

ROTAROU, Elena S
SAKELLARIOU, Dikaios
English
2017

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Since late 2009, Greece has been dealing with the effects of a debt crisis. The neoliberal principles embedded in the three structural adjustment programmes that the country accepted have required radical cuts in health care funding, which in turn have led to widening inequalities in health. This article focuses on access to health care for people with disabilities in Greece in the context of these structural adjustments. We investigate possible differences in unmet health care needs between people with and without disabilities, using de-identified cross-sectional data from the European Health Interview Survey. The sample included 5400 community- dwelling men and women aged 15 years and over. The results of the logistic regressions showed that people with disabilities report higher unmet health care needs, with cost, transportation, and long waiting lists being significant barriers; experience of all barriers was positively associated with low socio- economic status. These findings suggest that a section of the population who may have higher health care needs face greater barriers in accessing services. Austerity policies impact on access to health care in both direct and indirect ways, producing long-term disadvantage for disabled people. Social policies and comprehensive anti-discrimination legislation might help to address some of the barriers this population faces.

Rituals of knowing: rejection and relation in disability theology and Meister Eckhart

SMITH, Daniel G W
English
2017

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One of the most powerful claims of disability theology is that the rejection of persons with disabilities somehow correlates with a rejection of God. This ‘correlative rejection’ is, however, frequently just stated rather than explored in detail, something this article therefore seeks to remedy by examining one example of the correlative rejection that draws together the ethical concerns of theologians writing on intellectual disability with Meister Eckhart’s teaching on the human relationship with God. Here, the correla- tive rejection is exposed as an inevitable result of the narrow emphasis on autonomy and rationality in human self-perception which shape the habituated, even ritualised ways that we try to know persons with intellectual disabilities and God. By contrast, truly knowing and relating to persons with intellectual disabilities, God, and finally also ourselves, relies on a reconciliation with the dependence, vulnerability, and non-rational forms of exchange that a narrow attachment to autonomy and rationality seems directly to occlude. The correlative rejection thus signals both a practical and epistemological problem which results from how we view ourselves and how we subsequently relate to and try to know others, the harmful effects of which are both ethical and spiritual.

Towards Inclusion - A guide for organisations and practitioners

VAN EK, Vera
SCHOT, Sander
English
2017

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This guide is the result of collaboration between Light for the World (LFTW), Mission East (ME), and ICCO Cooperation.

Based on decades of experience of working with the most marginalized and excluded communities, the three organizations cooperated to record their experiences in a publication which can be used in a variety of relief and development contexts. ‘Towards Inclusion’ is designed to be an easy to use reference for organizational and program/project development with a focus on gender responsiveness and disability inclusion.

The guide is made up of three parts:
• the first part guides users through the process of organizational self-assessment to determine readiness to change and identify key steps towards becoming a more inclusive organization.
• the second part introduces the ACAP framework, as a means of improving inclusion in programming via Access, Communication, Attitude and Participation. A range of tools for measuring and improving inclusion at all stages of the project cycle are provided.
• the third part provides guidelines for the people or ‘change facilitators’ who will guide organizations through the process of change towards becoming more inclusive.

The publication can be found at “Towards Inclusion Guide” and the accessible version of the publication can be downloaded. Both are free of charge.

Possibilities for organisation trainings and/or webinars on the practical application of the guide are under consideration. Contact ACAP@gmail.com.

Disability and HIV

UNAIDS
English
August 2017

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This report highlights existing key evidence on the relationship between disability and HIV. It discusses the concrete steps needed for a person-centred, disability-inclusive HIV response that allows for increased participation of people with disabilities and integrates rehabilitation within the continuum of HIV care. Globally, it is estimated that 1 billion people (15% of the world’s population) have a disability. Of those aged over 15 years, approximately 110–190 million (2.2–3.8%) experience significant disabilities. Disability is increasing in prevalence due to ageing populations, trauma, accidents and the increase in chronic health conditions, including HIV. Persistent discrimination against and exclusion of people with disabilities, in particular women and girls with disabilities, increases their vulnerability, including their risk of HIV infection.
 

Policy development: An analysis of disability inclusion in a selection of African Union policies

GROCE, Nora
LANG, Raymond
SCHNEIDER, Marguerite
KETT, Maria
COLE, Ellie
English
July 2017

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Contemporary debates in international development discourse are concerned with the non‐tokenistic inclusion and participation of marginalized groups in the policy‐making process in developing countries. This is directly relevant to disabled people in Africa, which is the focus of this article. The United Nations Convention on the Rights of Persons with Disabilities delineates the principles of inclusion in society. Furthermore, the African Union (AU) plays a key role in advising its Member States about disability issues, and this advice should be reflected in disability‐inclusive policies. This article analyses nine policy or strategy documents produced by the AU, covering the policy domains of education, health, employment and social protection that are crucial to the inclusion of disabled people in international development. These were analysed according to seven discrete elements (rights, accessibility, inclusivity, implementation plans, budgetary allocations, enforcement mechanisms or disaggregated management information systems) using a rating scale of one to four, with four being the highest level of inclusion. The process (for example, level of consultation), the context (for example, the Sustainable Development Goals) and actors involved in the policy development were reviewed as far as was possible from the documents.

Dev Policy Rev. July 2017
https://doi.org/10.1111/dpr.12323

Hard to teach: inclusive pedagogy in social science research methods education

NIND, Melanie
LEWTHWAITE, Sarah
English
2017

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Amidst major new initiatives in research that are beginning to address the pedagogic dimension of building capacity in social science research methods, this paper makes the first move to apply the lens of inclusive pedagogy to research methods pedagogy. The paper explores the ways in which learning social science research methods is hard and may be anxiety-provoking, which has sometimes led to a deficit discourse in which learners are positioned as ill-prepared and fearful. Learners can then be blamed for being hard to teach when an inclusive pedagogical lens would support a more asset-based discourse. Nonetheless, the authors argue that without traditional deficit-based solutions of the remedial class, special needs label or special teacher within the methods learning environment, methods teachers have developed their own responses. These pedagogic responses, elicited from the authors’ research using methods of expert interviews, focus groups and video-stimulated dialogue, address challenges associated with the learner, the learning material and the teacher’s context. The paper differentiates between practical solution-focused strategies and more holistic approaches. The authors illustrate how methods teachers reach out to diverse learners and they conclude that data and standpoints are used in inclusive teaching to make connections and to support learning.

Healthcare provider's attitude towards disability and experience of women with disabilities in the use of maternal healthcare service in rural Nepal

DEVKOTA, Hridaya Raj
KETT, Maria
GROCE, Nora
MURRAY, Emily
English
June 2017

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BACKGROUND:
Women with disabilities are less likely to receive maternal healthcare services compared to women without disabilities. While few studies have reviewed healthcare experience of women with disabilities, no studies have been conducted to understand provider's attitude towards disability in Nepal, yet the attitude and behaviour of healthcare providers may have a significant influence on aspects of care and the use of service by women with disabilities. This study examines healthcare provider's attitudes towards disability and explores the experience of women with disabilities in maternal healthcare service utilization during pregnancy and childbirth.

METHOD:
The study used mixed method approach. An attitude survey was conducted among 396 healthcare providers currently working in public health facilities in Rupandehi district of Nepal. For additional insight, eighteen in-depth interviews with women with disabilities who used maternal healthcare services in a healthcare facility within the study district in their last pregnancy were undertaken. The Attitude Towards Disabled Persons (ATDP) scale score was used to measure the attitudes of healthcare providers. For quantitative data, univariate and multivariate analysis using ANOVA was used to understand the association between outcome and independent variables and qualitative analysis generated and described themes.

Reproductive Health, 2017

‘These are not luxuries, it is essential for access to life’: Disability related out-of-pocket costs as a driver of economic vulnerability in South Africa

HANASS-HANCOCK, Jill
NENE, Siphumelele
DEGHAYE, Nicola
PILLAY, Simmi
English
2017

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Background: With the dawn of the new sustainable development goals, we face not only a world that has seen great successes in alleviating poverty but also a world that has left some groups, such as persons with disabilities, behind. Middle-income countries (MICs) are home to a growing number of persons with disabilities. As these countries strive to achieve the new goals, we have ample opportunity to include persons with disabilities in the emerging poverty alleviation strategies. However, a lack of data and research on the linkages between economic vulnerability and disability in MICs hampers our understanding of the factors increasing economic vulnerability in people with disabilities.


Methods: This article aims to present data related to elements of this vulnerability in one MIC, South Africa. Focusing on out-of-pocket costs, it uses focus group discussions with 73 persons with disabilities and conventional content analysis to describe these costs.


Results: A complex and nuanced picture of disability-driven costs evolved on three different areas: care and support for survival and safety, accessibility of services and participation in community. Costs varied depending on care and support needs, accessibility (physical and financial), availability, and knowledge of services and assistive devices.


Conclusions: The development of poverty alleviation and social protection mechanisms in MICs like South Africa needs to better consider diverse disability-related care and support needs not only to improve access to services such as education and health (National Health Insurance schemes, accessible clinics) but also to increase the effect of disability-specific benefits and employment equity policies.

A world without Down’s syndrome? Online resistance on Twitter: #worldwithoutdowns and #justaboutcoping

BURCH, Leah
English
2017

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Presented by actress and comedian Sally Phillips, A World Without Down’s Syndrome has brought important ethical debates regarding prenatal screening into the public domain. By talking to people with Down’s syndrome, family members, and professionals, Sally has presented a nuanced and thorough examination of the type of world we are living in. Following the documentary, Twitter users have continued to engage with debates and have created a resilient platform for challenging public attitudes. This paper explores the ways in which Twitter hashtags have provided a space for such important and long overdue conversations. While it would not be possible to provide a full overview of the topical conversations that the two hashtags have provoked, I aim to focus on some of the most prominent topics. The following, then, will explore the potential of alternative narratives that resist, and disrupt, normative notions of the human using the hashtags #worldwithoutdowns and #justaboutcoping.

Extra costs of living with a disability: A review and agenda for research

MITRA, Sophie
PALMER, Michael
KIM, Hoolda
MONT, Daniel
GROCE, Nora
English
April 2017

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Background
There has been a growing interest in disability and poverty on the international research and policy stages. Poverty assessments for persons with disabilities may be affected by the experience of extra costs associated with a disability.

Objective
This article provides a systematized review of the global literature on the direct costs associated with living with a disability at the individual or household level.

Methods
We searched three databases for peer-reviewed journal articles that estimated extra costs associated with disability: Econlit, SocIndex and PubMed.

Results
We found 20 such studies conducted in 10 countries. These studies were predominantly from high-income countries. Although studies were heterogeneous (e.g., in terms of disability measures and cost methodologies), estimated costs were sizeable and some patterns were consistent across studies. Costs varied according to the severity of disability, life cycle and household composition. Highest costs were observed among persons with severe disabilities, and among persons with disabilities living alone or in small sized households.

Disability and Health Journal
Volume 10, Issue 4, October 2017, Pages 475-484
https://doi.org/10.1016/j.dhjo.2017.04.007

HIV/AIDS knowledge, attitudes and behaviour of persons with and without disabilities from the Uganda Demographic and Health Survey 2011: Differential access to HIV/AIDS information and services

ABIMANYI-OCHOM, Juie
MANNAN, Hasheem
GROCE, Nora
McVEIGH, Joanne
English
April 2017

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Uganda is among the first to use the Washington Group Short Set of Questions on Disability to identify persons with disabilities in its Demographic and Health Survey. In this paper, we review the HIV Knowledge, Attitudes and Behaviour component of the 2011 Ugandan Demographic and Health Survey, analysing a series of questions comparing those with and without disabilities in relation to HIV/AIDS knowledge, attitudes and practices. We found comparable levels of knowledge on HIV/AIDS for those with and those without disabilities in relation to HIV transmission during delivery (93.89%, 93.26%) and through breastfeeding (89.91%, 90.63%), which may reflect increased attention to reaching the community of persons with disabilities. However, several gaps in the knowledge base of persons with disabilities stood out, including misconceptions of risk of HIV infection through mosquito bites and caring for a relative with HIV in own household (34.39%, 29.86%; p<0.001; 91.53%, 89.00%; p = 0.001, respectively). The issue is not just access to appropriate information but also equitable access to HIV/AIDS services and support. Here we found that persons with multiple disabilities were less likely than individuals without disabilities to return to receive results from their most recent HIV test (0.60[0.41–0.87], p<0.05). HIV testing means little if people do not return for follow-up to know their HIV status and, if necessary, to be connected to available services and supports. Additional findings of note were that persons with disabilities reported having a first sexual encounter at a slightly younger age than peers without disabilities; and persons with disabilities also reported having a sexually transmitted disease (STD) within the last 12 months at significantly higher rates than peers without disabilities (1.38[1.18–1.63], p<0.01), despite reporting comparable knowledge of the need for safer sex practices. This analysis is among the first to use HIV/AIDS-related questions from Demographic Health Surveys to provide information about persons with disabilities in Uganda in comparison to those without disabilities. These findings present a more complex and nuanced understanding of persons with disabilities and HIV/AIDS. If persons with disabilities are becoming sexually active earlier, are more likely to have an STD within the preceding 12 month period and are less likely to receive HIV test results, it is important to understand why. Recommendations are also made for the inclusion of disability measures in Uganda’s AIDS Indicator Survey to provide cyclical and systematic data on disability and HIV/AIDS, including HIV prevalence amongst persons with disabilities.

PLoS ONE 12(4): e0174877
https://doi.org/10.1371/journal.pone.0174877

Counting disability: emerging consensus on the Washington Group questionnaire

GROCE, Nora
MONT, Daniel
English
2017

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The issuing of a statement by the Interagency and Expert Group on Sustainable Development Goal (SDG) Indicators in Geneva, a group of leading UN agencies, civil society actors, and independent experts strongly supporting the Washington Group on Disability Statistics’ Short Set of Questions (WGSS) is noted and a short explanation of the questions is provided.

 

The Lancet Global Health VOLUME 5, ISSUE 7, PE649-E650, JULY 01, 2017

https://doi.org/10.1016/S2214-109X(17)30207-3

Exploring structural violence in the context of disability and poverty in Zimbabwe

MUDEREDZI, Jennifer T.
EIDE, Arne H.
BRAATHEN, Stine H.
STRAY-PEDERSEN, Babill
English
2017

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Background: While it is widely assumed that disability, poverty and health are closely linked, research falls short of fully understanding the link. One approach to analysing the links between disability and poverty is through the concept of structural violence, referring to social structures that contribute to the impoverishment of individuals or communities. These structures can be political, ecological, legal and economic, among others.


Objective: To explore structural violence and how it affects families of children with cerebral palsy among the Tonga ethnic group living in poor rural communities of Binga in Zimbabwe.


Method: This is a longitudinal, qualitative and ethnographic study. Data were collected over a period of eight years from 2005 to 2013. Data collection techniques were in-depth interviews, participant observation and focus group discussions. Purposive sampling was used to recruit 53 informants.


Results: Structural violence was noted through four themes: internal displacement and development, food and politics, water and sanitation, and social services. Poverty was noted in the form of unemployment, lack of education, healthcare, food and shelter. The concept of structural violence inflicted social suffering on the informants. Politics played a major role in activities such as food withdrawal, lack of water, development and allocation of local resources to ‘the people of the city’, leaving the informants struggling with care.

 

Conclusion: Political and economic forces have structured risks and created a situation of extreme human suffering. The capabilities approach brings out the challenges associated with cerebral palsy in the context of development challenges.

CRPD Course (with an emphasis on how users and survivors of psychiatry can use the CRPD to advance our human rights)

Tina Minkowitz
English
March 2017

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The Convention on the Rights of Persons with Disabilities is a watershed in the human rights of users and survivors of psychiatry. This course is offered with an emphasis on how users and survivors of psychiatry can use the CRPD to advance human rights of persons with disabilities.

 

The Convention of course guarantees the rights of all persons with disabilities, in all their diversity.  Major constituencies organized at the international level included the World Network of Users and Survivors of Psychiatry, World Federation of the Deaf, World Blind Union, World Federation of the Deafblind, Inclusion International (persons with intellectual disabilities and their families), International Federation of Hard of Hearing Persons, and Disabled Peoples’ International (cross-disability).  They organized all disabled people’s organizations and allies into the International Disability Caucus, and aimed for the Convention to be equally relevant to all persons with disabilities irrespective of the type of disability or geographical location.  Every constituency finds what it needs in the text, and the Convention can be approached from a number of different starting points to uncover its potential.

 

The course is taught by Tina Minkowitz, Esq., a human rights lawyer and survivor of psychiatry who was instrumental in developing the relevant provisions.  She represented the World Network of Users and Survivors of Psychiatry (WNUSP) in the drafting and negotiation of the CRPD, and subsequently founded the Center for the Human Rights of Users and Survivors of Psychiatry (CHRUSP).

Quality inclusive education at the heart of the SDGs

Julia McGeown
Marion Steff
Andrew Balchin
Majken Disch
English
February 2017

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These two posters have been designed to showcase how the Sustainable Development Goals ( SDGs)  and Inclusive education are linked, using visual diagrams with photographic examples.  The first of these posters details the importance of inclusive quality education, particularly for children with disabilities , in all of the 17 SDGs. The second one focuses on goal 4 and gives concrete actions to be taken  to implement the different targets,  with a special focus on  student with disabilities.

Progress Report on the implementation of the European Disability Strategy (2010-2020)

EUROPEAN COMMISSION
English
February 2017

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The Strategy is the main instrument to support the EU's implementation of the UN Convention on the Rights of Persons with Disabilities (UNCRPD). Progress in all eight areas of the strategy is reported: accessibility, participation, equality, employment, education and training, social protection, health and external action. Initiatives such as the Directive on Web Accessibility, the proposal for a European Accessibility Act, the EU Disability Card project (being piloted in 8 Member States) and provisions in the Erasmus+ programme (allowing better mobility for students with disabilities) are highlighted. 

 

This report presents progress achieved in the first five years of the Strategy and assesses implementation. Many stakeholders have contributed to this work. The United Nations reviewed how the EU has been implementing its obligations under the UNCRPD3, and issued Concluding Observations with concrete recommendations for follow-up. These contain guidance on priority issues while also highlighting the steps already taken (see Annex 3). The European Parliament and the European Economic and Social Committee subsequently prepared their own reports on the implementation of the UNCRPD, while civil society organisations provided analysis and proposals (see Annex 4). The Commission also launched a public consultation to collect views from a broad range of stakeholders on the current situation of persons with disabilities and the impact of the Strategy so far, gathering more than 1,500 contributions (see Annex 1). This report also looks at the role of the supporting instruments and at the implementation of the UNCRPD within the EU institutions. Finally, it looks ahead at how the Strategy will continue to deliver on its objectives. In addition, the report includes a comprehensive and up-to-date overview of EU legal acts with an impact on disability matters (Annex 5)

 

SWD(2017) 29 final

Educational inclusion and critical neuroscience: friends or foes?

BILLINGTON, Tom
English
2017

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Momentum is continuing to grow in the circulation of neuroscientific discourse, informing aspects of how we live but affecting too how we think about education and learning. Neurologically informed intrusions into education frequently align with psychology which has until now largely adopted a ‘medical model’, supporting policies and practices which ultimately invoke psychopathology and arguably render individual young people more vulnerable to various forms of social and educational exclusion. This paper urges caution in respect of understandings of educational neuroscience that focus on individual deficits and diagnoses. Rather it holds in mind the broader historical context for neuroscience and its implications for our understandings of what it is to be human in the twenty first century and thereafter for education and learning. Theoretical resources from critical and affective neuroscience but also critical educational psychology are brought together specifically to support the principles of inclusionist policies and practices in education.

Disability and HIV

UNAIDS
English
January 2017

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This report highlights existing key evidence on the relationship between disability and HIV. It discusses the concrete steps needed for a person-centred, disability-inclusive HIV response that allows for increased participation of people with disabilities and integrates rehabilitation within the continuum of HIV care.

The burden of mental disorders in the eastern Mediterranean region, 1990-2013

CHARARA, Raghid
English
et al
January 2017

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The Eastern Mediterranean Region (EMR) is witnessing an increase in chronic disorders, including mental illness. With ongoing unrest, this is expected to rise. This is the first study to quantify the burden of mental disorders in the EMR. Data was used from the Global Burden of Disease study (GBD) 2013. DALYs (disability-adjusted life years) allow assessment of both premature mortality (years of life lost–YLLs) and nonfatal outcomes (years lived with disability–YLDs). DALYs are computed by adding YLLs and YLDs for each age-sex-country group.

 

https://doi.org/10.1371/journal.pone.0169575

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